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Saving lives through education, advances in treatment and finding a cure for Barth syndrome

Barth Syndrome Trust image

Barth Syndrome Trust image


Charitable Incorporated Organisation (CIO) - Registered Charity No: 1181830

Governing document

Constitution registered 31st January 2019 with the Charity Commission.  This new legal structure replaces the Unincorporated Trust of 2003 but the objectives of the charity remain essentially unchanged.  Changing to a CIO was a decision made by the Board of Trustees to allow the charity to limit trustees' personal liability and to hire staff. 


Area of benefit

United Kingdom and elsewhere in the world.



Charitable objects

The relief of individuals with, and carriers of, Barth syndrome and their families, within the United Kingdom and elsewhere in the world in particular but not exclusively by:

a) providing access to information, advice and support in relation to the condition to the public and, in particular, diagnosed individuals and their extended families and those in the educational, scientific, medical and allied health care professions.

B) the promotion and funding of research into the causes and effects of the condition and the dissemination of the useful results of the same for the benefit of the public.



Code of Fundraising



Data Breach

Data Retention

IT Access



Social Media

Subject Access Request

Bristol Clinic Travel Expenses

Trustee Code of Conduct

Volunteer Policy



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